Flores Andrea, Burgos Sarah, Abarca-Barriga Hugo
Faculty of Human Medicine, Universidad Científica del Sur, Lima, Perú.
Department of Genetic & Inborn Error of Metabolism, Instituto Nacional de Salud del Niño - Breña, Lima, Perú.
Intractable Rare Dis Res. 2022 Nov;11(4):180-188. doi: 10.5582/irdr.2022.01079.
Rare diseases (RDs) affect up to 8% of the world's population, and unfortunately, health professionals have a low level of knowledge regarding the impacts of RDs on the social, psychological, and economic spheres of the patients and their families; hence, RD management is inadequate, consistently empirical, and precarious. The objective of this study was to determine the knowledge level of the medical students from a non-state university and physicians from Lima, Peru of RDs through a virtual survey for an analytical cross-sectional study. A total of 338 medical students and 382 physicians were surveyed. Results showed that several of the respondents (68.1% of students and 48.7% of physicians) had heard of the term "rare disease", but only a few stated that they had received any kind of training specific to it. Of the physicians, 46.6% considered that there should be a course about RDs in medical curricula, and more than 60% considered RDs a public health problem. Most respondents prioritized the planning of a higher budget for common diseases and believe it is convenient to allocate a specific fund for RDs. More than half of the participants had a very poor knowledge level. Due to students and physicians' low level of general knowledge of RDs, it is important to raise awareness and improve their education about these pathologies because this will have beneficial effects for RD patient care.
罕见病影响着全球多达8%的人口,不幸的是,卫生专业人员对罕见病对患者及其家庭的社会、心理和经济领域的影响了解程度较低;因此,罕见病管理不足,始终停留在经验层面,且不稳定。本研究的目的是通过一项分析性横断面研究的虚拟调查,确定秘鲁利马一所非国立大学的医学生和医生对罕见病的了解程度。总共对338名医学生和382名医生进行了调查。结果显示,一些受访者(68.1%的学生和48.7%的医生)听说过“罕见病”这个术语,但只有少数人表示他们接受过任何针对罕见病的特定培训。在医生中,46.6%认为医学课程中应该有关于罕见病的课程,超过60%认为罕见病是一个公共卫生问题。大多数受访者优先考虑为常见疾病规划更高的预算,并认为为罕见病分配专项资金是合适的。超过一半的参与者知识水平非常低。由于学生和医生对罕见病的一般了解程度较低,提高他们对这些疾病的认识并改善他们的相关教育很重要,因为这将对罕见病患者的护理产生有益影响。